Managing the psychosocial aspects of lymphedema
Using cognitive behavioural therapy skills towards better self-care
Successful care of lymphedema is good self-management. This research suggests that subtle changes in behaviour and lifestyle of patients could revolutionize a patient’s perspective on living with lymphedema.
By Jane Durston
Some people with lymphedema experience complex psychosocial issues, which have the potential to impact a patient’s overall well-being, as well as their adherence to the treatment regimen. Given that the key to successful management of lymphedema is good self-management, this may require changes in behaviour and lifestyle. To facilitate these changes, some cognitive restructuring may be beneficial.
It’s important that healthcare professionals appreciate the genuine frustrations that occur for some people with lymphedema.
The National Health Service (NHS) and the National Institute for Health and Care Excellence recommends Cognitive Behavioural Therapy (CBT) as useful for people with long-term conditions.
The UK’s Lymphoedema Support Network (LSN) estimates lymphedema affects at
least 240,000 men, women and children in the UK, many of whom remain undiagnosed and untreated. Garry Cooper of the British Lymphology Society (BLS) notes, “England has yet to address the inequity in both policy and service provision. Until this is resolved, patients will continue to be misdiagnosed and mismanaged with all the resultant complications.” This is a global challenge that many countries, including Canada, face. The BLS’s, “Standards for Lymphoedema Care,” (2014) states the British GP Consortia and NHS Commissioning Boards should, “develop services in line with the long term nature of the condition such as the provision of psychological, physiotherapy and occupational services.”
It’s important that healthcare professionals (HCP) appreciate the genuine frustrations that occur for some people with lymphedema. They may not fully understand their condition, and sometimes find their general practitioner doesn’t, either. Instead, they may have been given a variety of mixed and indeed punitive, guilt-laden messages, e.g. you’re overweight, you have a swollen limb; you have to live with it, there’s nothing
Jane Durston is Operations Manager for the British Lymphology Society. She graduated from the University of Bath Spa with a Postgraduate Diploma in Counselling Psychotherapy in 2012, and from the University of Gloucestershire with a MA (with distinction) in Critical & Creative Writing in 2013.
that can be done. One patient reported being told, “it’s a small price to pay for surviving cancer – think yourself lucky.”
What kind of experiences do people with lymphedema report?
Ridner (2009:1) highlights a variety of recurrent themes in her research, “lack of treatment resources, lack of lymphedema research, pleas for research to be undertaken to study their conditions, a willingness to participate in research, deep anger that healthcare professionals seemingly either do not care or fail to understand the seriousness of their problems.”
Boxall & Taplin (2010:13) state, “75.5% of patients demonstrated a need for psychosocial occupational therapy input.”
Bulley (2007:29) reports, “several individuals found adjusting to living with this chronic disorder traumatic and felt the need for support.” They described anger and difficulties in accepting the impact of lymphedema on their lives. One service provider supported this, explaining that many patients need to go through, “a
phase of acceptance that they have this condition and it isn’t going to go away.”
Loss and grief
Parkes (1998:856) suggests that, “the consequences of loss are so far reaching that the topic should occupy a large place in the training of health care providers –but this is not the case.”
What losses might a patient experience after developing lymphedema?
g Hope
g Physical health and wellbeing
g Control over body
g Dexterity
g Mobility and travel
g Ability to work/access to employment
g Self-esteem/confidence
g Body-image
g Choice e.g. Ability to select/wear chosen clothing/footwear
g Faith in the medical profession to “cure” us g Body anonymity
Both the swelling and the bandaging can draw unwelcome public attention and can result in people being asked uninvited questions about what’s “wrong” with them. People are often objectified by the media, and we are encouraged to make value judgments about who people are, based on how they look. Therefore, a limb that looks “DIS-figured” may have more impact on how people are treated in society and how they perceive themselves. Bulley (2007: 23) stated that in several studies, “disruptions to body image and confidence in personal appearance were perceived to be among the greatest problems.” It is important for us to recognize and challenge our own perceptions in this process. As Woods (2007:61) pointed out, “the perceptions of the healthcare professional influence our interpretation of the patient’s needs.”
People need to be supported through a period of grief about these losses, in order for them to move forward to a place of acceptance. Communicating hope that the condition can be well managed, is crucial. Just as vital, is conveying that the HCP has limitations in what can be achieved in the clinic alone and for the best results, the patient needs to be fully engaged. They should
be encouraged to feedback any difficulties they are having in adhering with treatment (in practice). Linnitt (2005:5) points out that, “the psychological impact of lymphedema can be enormous...health professionals should never underestimate the psychological implications and physical disability that is often associated with the condition.”
Fu et al (2013) identified that there is a need to “develop a lymphedema-specific instrument to better characterize the psychosocial and social impact identified through the synthesis of qualitative studies”.
Hader t (2013:19) found that “embedding psychological interventions within physical health services and offering choice around whether to focus on physical or emotional
The Cognitive Behavioural Therapy Model
management may confer additional benefits for people with long term conditions (LTC)”. Hadert adapted Cognitive Behavioral Therapy (CBT) to guide patients with LTC towards self-help. This next section explains the basic theory behind the CBT model, as well as some beginner’s techniques for practice. A Cognitive Behavioural Therapist listens to what the client has to say, and then categorizes each of their statements into one of these components. A small change in any of these five areas can impact on the other areas.
Understanding the patient’s “back story” can give the HCP vital clues about a patient’s vulnerability to certain barriers to treatment adherence. This will help the HCP assess whether the patient will benefit from additional support from the multi-disciplinary team.
Socratic dialogue
Socratic dialogue is a method of questioning used to broaden our understanding of problems. It can be used to explore alternative ways of thinking and test out beliefs. This involves asking informational questions, e.g. “Can you give me a specific example?” “How is this a problem for you?” “How did you feel?” “What did you do?” while listening attentively to the patient’s responses and making notes. From these notes, one can summarize what the patient has said, allowing them to make amendments. These can be followed by analytical questions: “How does this fit with that?” “What would you have done in the past?” “What would you advise someone else in this situation?” “Given these experiences, what do you think would help you next time?”
MOODS:
(generally identified by one word), e.g. anxiety, depression, happiness, sadness
PHYSICAL REACTIONS:
e.g. sweating, giddiness, exhaustion, pain, increased heart rate
THOUGHTS:
Anything that runs through our head, including images/memories/questions
BEHAVIOURS: Anything we DO:
e.g. over-eating, social withdrawal, driving, walking
ENVIRONMENT:
All of our previous experiences in the world: where and with whom, we live/work today
This enables us to shift from set ideas about the condition, to exploring what specific problems this patient is experiencing in their day-to-day lives. We might consider avoiding the use of the word “why.” For example, instead of asking, “Why haven’t you worn the compression garment...why haven’t you done the exercises?...why haven’t you lost the weight?” we could try, “what has got in the way of wearing the compression garment?…what benefits can you see from doing the exercises?...how do you think losing some weight would affect your condition? or even, “how is that working for you?”
This can also really help the HCP to stop attempting to solve all the patient’s problems, but help the patient to find their own answers, through guided discovery, a process that involves asking pertinent questions that support people to discover their own solutions. Introducing the question, “when can you do that?” helps the patient commit to a timescale for change and identify things that are in their way. The HCP and patient can then work through strategies, to overcome any obstacles. LP
Further information and online CBT training are available from: www.cacbt.ca and www.aptcanada.com
Patients can find self-help resources from: www.cmha.ca
References
1 Bell (1999:119,120) Doing Your Research Project. Third edition. Open University Press: Maidenhead.
2. British Lymphology Society (2013).
“Standards of Lymphoedema Care.” (online) Accessed on: 29.1.14. Available from URL: www.thebls.com
3. Boxall, S., & Taplin, N. (2010). “A Macmillan Pilot: The Benefits of Occupational therapy in Lymphoedema.” Velindre Cancer Centre: Wales. Pp 13.
4. Bulley, C. (2007). “Making a case for funding for lymphoedema services.” Journal of Lymphoedema Vol 2, No 2. p2,28,29.
5. Cooper, G. (2014) “60 second interview with Garry Cooper, Macmillan Lyphoedema Nurse Specialist”. Wound Care Today 18.2.14 (online). Accessed on 19.2.14. Available from URL: https://woundcaretoday.com/news/60sec/60-secondsinterview-with-gary-cooper-macmillanlymphoedema-nurse-specialist-
6. Fu, M.R.; Ridner, S.H.; Hu, S.H.; Stewart, B.R.; Cormier, J.N. & Armer, J.M. (2013). “Psychosocial impact of lymphedema: a systematic review of literature from 2004-2011.” Psycho-Oncology
John Wiley & Sons Ltd. pp. 1466-1484.
7 Hader t, A. (2013). “Adapting cognitive behavioural therapy interventions for anxiety or depression to meet the needs of people with long term physical health conditions: a narrative review.” Clinical Psychology Review. University of Exeter. pp. 1-45.
8. Linnitt, L. (2005). “Lymphoedema: Recognition, Assessment & Management.” Wound Care. March 2005 issue. MA Healthcare:London. March Hitchcock & Hughes (1995:69) Research & The Teacher. Routledge: London.
9. Ridner, S. (2009). “The Psycho-Social Impact of Lymphoedema.” Lymphatic Research & Biology. Vol. 7, No.2. Vanderbilt University School of Nursing: Tennessee. p 1.
10. Woods, M. (2007). Lymphoedema Care Blackwell Publishing:Oxford. pp 55-60.
Works consulted: www.thebls.com and www.lymphoedema.org
